Everett’s Echo, 1 Childrens Hospital Dr (2026)

07/02/2026

Happy Congenital Heart Defect Awareness Day!
I couldn’t get a good picture of both kids together (welcome to two under three 🤣), Mari is so big she has NO red that fits her and I had work!

♥️💙🫀

08/10/2025

I’ve been pretty reluctant to share an incredible amount lately because I love the simple little life we’ve been leading.

Everett has adjusted very well to becoming a big brother and seeing him and his sister love each other is breathtaking (she is almost 3 months old and loves to watch, smile, babble and giggle with her brother)!

The reason I am posting, however, is because I reached out to ENT about when to schedule Everett’s next appointment with them and we ended up with a big, fat referral to another specialist. Everett’s biopsy results from his adenoidectomy in January were concerning. I was livid to find out this information as I had inquired about the results because I found them concerning and they told me I had nothing to worry about.

Right now, we meet with this specialist in November to rule out, or be diagnosed with a chronic and progressive disease that his results are pointing towards.

Those are all the details I’m willing to share at the moment until we know for certain what is going on. I’m sad that I didn’t listen to my mom gut and push harder with ENT, however, I’m continually gaslit and met with resistance by them and there isn’t much I could have done when they didn’t want to see him and I would have needed a referral in the first place to see the new specialist.

Continue to send good vibes our way for our little man!

06/05/2025

It’s been a vveerrrryyyy long time since I’ve posted an update on Everett…safe to say we’ve been pretty busy around here 😅

Everett will become a big brother sometime in July! I know, we’re a little crazy. Navigating a pregnancy (let alone, a high risk one) with a medical child has been a bit challenging. There are some weeks we’ve been in Pittsburgh 3-4 times. Nonetheless, we are all super excited to watch Ev be the best big brother to his little sister! ♥️

Since our last update, a lot has changed. Everett had his adenoids removed mid-January. His recovery was pretty difficult for him, a lot more than we expected. We were lucky enough to not have to stay overnight and were discharged shortly after he was in recovery. Unfortunately, we did discover he has a submucosal laryngeal cleft and his tonsils are still enlarged somewhere between a 2-3+. He also suffered an airway spasm in the PACU and had to be re-intubated for a little while. Luckily, once we were able to see him, he only needed to be on oxygen from a mask. His left vocal cord is also permanently paralyzed and he’ll likely never have any function return to it. He will need to have it bulked again sometime in the near future.

Shortly after his adenoid removal Everett also began to have choking/gagging fits. These would happen sometimes while he was eating, however, mostly at night. We consulted ENT and were met with a lot of resistance from them. Thanks to his pediatrician, however, we were able to have a feeding bridge and swallow study to rule out any aspiration. We are happy to report that he had none whatsoever! We started him on Pepcid twice a day and have since cut it down to once at night while we wait to be seen by GI.

We are still working with Speech weekly and have added OT to the mix since February. We had a harsh decline in eating and sleeping after his adenoid removal and OT has been helping us pick up those pieces a bit. Luckily, things have gotten a bit better on that front! Everett is still a 5am riser though which has made it pretty difficult through my first trimester and now that I’m entering my third. It’s also pretty common for heart kiddos to have some type of sleep issues, whether it’s too much or too little sleep. Right now, I am thriving on the late morning nap I still take with him 😂

Otherwise, we have a sweet, crazy, curious little boy on our hands! He loves playdough, kinetic sand, Spider-Man, Bluey, all types of cars, bubbles, jumping in puddles, getting dirty and having freedom to explore and learn. He’s also a bigggggg sweets kid, he gets it naturally 🤷🏻‍♀️

My last big and exciting update for this post is that he is doing extremely well as far as his heart health goes. He had a sedated echo during his surgery and his heart function and structure was basically unremarkable. We saw Dr. Zinn in April and he told us we wouldn’t need to come back until next April! He told us to keep in touch if we notice anything concerning and to let him know if we suspected our new little one needed to be seen and he’d see them both at the same time.

Baby girl did have a fetal echo that looked amazing but we decided with the team at Magee and Children’s that she will have an echo right before she is discharged since coarctations can be tricky to predict on fetal echo. They said it is extremely reassuring that there were no other structural abnormalities with her heart but we are going to play it safe!

As we have more updates on Everett we will post, but we are just so happy to be here. ♥️

13/10/2024

Everett Update:

It’s been a minute, which is never a bad thing 😅

We go Monday afternoon to begin the RSV preventative shot that he’ll get every single month through March. Unfortunately, once he turns two, he’ll no longer qualify to receive this shot which is unfortunate given his situation with his airway.

Tuesday we have a pre-op appointment with ENT in Pittsburgh. Everett has surgery scheduled for mid-January to have his adenoids removed and to do a deep scope and some biopsies of both his upper and lower airway. While he is under general anesthesia, Cardiology is also going to do a repeat echo to get a better look at his heart while he isn’t awake and wiggling. Yes, our pre-op is months in advanced because if you deal with Children’s ENT department, you know how difficult it is to get in with them. This is our first step at resolving his narrowed airway issue and we are hopeful that this, along with possibly tonsil removal, will do the trick. Otherwise, we are looking at some pretty uncomfortable procedures in the future or even a full reconstruction of his airway. At this appointment we’ll evaluate where he is at, how he is doing so far this sick season and have a normal scope done. This will show us if any function has returned in his vocal cord along with if his adenoids and tonsils have gotten any larger.

Otherwise, Everett is really a normal one and a half year old…testing boundaries, getting into everything, exploring and going nonstop! We still see a Speech Therapist every week to continue developing his language skills, he even knows a little bit of sign language.

We continue to focus on the fact that right now we have a bit more normalcy than chaos in this chapter of our story but know that can always change in the blink of an eye. Regardless, we’re just glad to be along for the ride. ❤️💙

26/06/2024

Everett Update:

Yesterday we had our follow up with Dr. Tobey in ENT’s airway clinic where we got to see both her and a speech therapist.

They made the decision to NOT scope him since his last was pretty recent and they didn't expect any change to his vocal cords and airway. His next scope will be in October.

After going back and forth they did, however, make the decision to schedule him an adenoidectomy this winter along with a laryngoscopy, bronchoscopy, esophagoscopy with an esophageal biopsy at the same time. His adenoids were on the larger side of medium upon his last scope and are likely causing a lot of his issues with upper respiratory illnesses and sleep.

They decided to try to get his insurance to provide a nebulizer and called in a few different prescriptions to use along with it for when he gets sick. They said now that we know how he gets sick with all these airway issues we can try to treat things more aggressively. We also made the decision to make sure along with antibiotics, a steroid will be a front line of defense to prevent the oxygen saturation issues that come with his narrowed airway when there’s a lot of post nasal drip from these sicknesses.

As far as the new swallowing irritation that has come about goes they asked me to keep in touch, take videos, message updates. They are hoping maybe he just irritated his esophagus with the sharp edge of a cracker, cheez it, etc and that is what is causing the issue. They said if he seems to be uncomfortable for weeks on end that we can schedule an X-Ray where they have him drink some barium to coat the esophagus and do an X-ray that focuses specifically on his esophagus to see if anything shows up (it is NOT a swallow study, she mentioned the name but it got away from me).

They were able to watch him eat his lunch yesterday and were super happy with how well he was doing and the way in which he was eating, chewing and swallowing! They watched and listened to him walk around and babble and say a few words and said he definitely has a bit of a delay but they aren't overly concerned since we already working in home with a therapist! They are also very pleased with his weight, overall development and how well he has transitioned into drinking regular liquids. They reassured me that they don't have any concerns of him being or becoming nonverbal because of how much he interacts with others.

We made the decision to move forward with the adenoid removal because anything else we do with his airway is much more permanent and will increase his risk of aspiration and potentially delay making more progress with solid foods. It is something we will discuss at his post op appointment if no improvements are made by the removal of the adenoids.

We have a whole month off from visiting Children’s (for now, but Everett does what Everett wants 😂) and are just looking forward to spending Fourth of July weekend in Ohio with family! We are also pleased to hold off on surgery until Winter so we can still take our trip to the Outer Banks in September. 🤞🏼🙏🏼

25/06/2024

When I read a story about a newborn losing their life due to an undiagnosed heart defect I feel so angry.

So many times, newborns are released from the hospital without anyone catching on to how sick they are. We have to do better.

Abigail’s anatomy scan, the 20 week scan that seems to make moms feel like they got the “all clear”, did not catch her heart defect. Yes, that scan can and does catch a lot of anomalies, but it doesn’t always. Abigail’s was not caught until I was 30 weeks pregnant, and she wasn’t diagnosed until I was 33 weeks.

Expecting mothers also get routine blood work that tests for some gene mutations that can cause children to be really sick, but it doesn’t check for all. How could they? The number is too big.

Many times a pulse ox test is performed on newborns which can detect some critical CHDs. The ones that present right away with really sick children, but not always. A lot of the time these babies are born okay and then get worse quickly. I’m so glad this is a test they do, but it still isn’t always enough. And not every baby is born in the hospital. I really wish this was part of a well child check up at the Ped as well.

Pediatricians visit baby in the hospital where they check their vitals and reflexes. I know many amazing doctors catch on to things that aren’t right. But many amazing doctors also miss things.

A healthy baby has no reason to get an echo. I fully understand this. Testing is not necessary without reason for concern. So what can we do?

That’s where moms like me come in. We spread awareness to hopefully educate new moms on what to look for. However, I feel like this is something hospitals should do. Nurses should be able educate parents on warning signs upon discharge.

Symptoms of CHD to look for in a newborn:

-Bluish skin, lips, and nail beds: Also known as cyanosis, this happens when there isn't enough oxygen in the blood.

-Rapid breathing: This can be especially noticeable during feeding, which is like exercise for babies.

-Difficulty feeding and gaining weight: Babies with CHD may not be able to take their full feedings, or may sweat on their forehead while feeding.

-Swelling: This can occur in the abdomen, legs, or around the eyes

-Irritability or inconsolable crying: Newborns with CHD may be unusually sleepy or tired.

-Other symptoms: These may include heart murmurs, poor blood circulation, flared nostrils, or an enlarged abdomen.

I never received any information on what to look for to make sure my baby was healthy when I was sent home with Audrey. We were wished well and off we went.

Seeing babies die because of known CHD is awful. Seeing babies die from an undiagnosed CHD is unfair. No one should lose their child to this disease. That’s the harsh reality of this all though.

Did you know about CHD before you or someone you knew was diagnosed? If you don’t know anyone affected by it, did you learn it from families raising awareness?

My answer is, I had no idea what CHD really was before Abigail was diagnosed. I had heard of “heart warriors” but knew nothing more.

19/05/2024

Shirts for the Pittsburgh Congenital Heart Walk this year! Orders due and paid for no later than Tuesday morning ❤️💙

24/04/2024

Is it Summer yet?
Because we are DONE with sick season. 🦠

We do absolutely everything in our power to keep him healthy and safe from germs and viruses…yet still he gets them 😔 It’s one of the most defeating things to my momma heart because I yearn for play dates and fun events for him to participate in…yet I’m terrified of him picking something up and it landing us in the hospital. Because without all of that he is STILL picking up sicknesses. STILL ending up in the ER.

Fingers crossed this steroid helps him clear all the secretions in his airway he is unable to move and is causing him so much difficulty breathing.

23/04/2024

Momma and Ev have been fighting a baddddd cold the past few days so lost a of snuggles and silly pics ❤️

22/04/2024

On this day, one year ago, we wheeled our baby to the double doors of the OR with Dr. Viegas and her team just shortly after 10am. Just after noon we got the news that Everett’s coarctation repair had been a success and he was extubated in the PACU.

A story I have never shared here on the internet, let alone with very many people, is that before Everett’s surgery, I had my Dad come into the room and bless him with Holy Water. He placed the cross he had worn since he was diagnosed with cancer into Everett’s warmer. We also had placed a Mother Mary pendant in with him that my grandmother had blessed. When we got the news that it was time for his case, we had to remove everything from his warmer. It was shortly after he was being wheeled back that I realized we never removed the pendant. When he returned from surgery, the pendant was nowhere to be found. Our nurse asked the PACU, Surgeons…no one had seen it. It was in that moment that I realized I had done a trade with God that day, the pendant for the life and successful repair of my son. I am Christian, I’d be lying if I said I were a devout one…I couldn’t tell you the last time I went to church. But, that opened my eyes to some greater power at work for Everett that day.

Happy Open Heart Surgery Anniversary, little one. You may be 1 in 100, but to us you are truly 1 in a billion 💙❤️🫀

21/04/2024

Dr.Zinn just told us our last visit he couldn’t wait until Everett was old enough for heart camp ❤️💙🫀

Everett’s Echo

07/02/2026

08/10/2025

06/05/2025

13/10/2024

26/06/2024

25/06/2024

19/05/2024

24/04/2024

23/04/2024

22/04/2024

21/04/2024

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